Director Matthew Galkin’s documentary Kevorkian (aired on HBO on June 28th; also available on YouTube; ETA: as codeman38 points out below, the YouTube version is, unfortunately, not closed-captioned) is one of those documentaries that I felt nervous about watching, mostly because I was extremely skeptical that it would be anything other than a massive apologia for the man colloquially known as “Dr. Death” in the U.S. news media and among much of the North American public. I was also concerned that my own complicated views on physician-assisted suicide would impact my feelings on whether this documentary was worth the time and emotional energy spent watching it. Like many documentaries, it is a difficult film to watch. It is not uplifting by any means. Parts of it are brutal. Parts of it are frightening. That said, however, I am ultimately glad that I watched this film — not because it “humanizes” Jack Kevorkian or acts as an apologia, but because it deftly explores issues of ethics, law, the power of the media, and legacy.

The entire film is framed by Kevorkian’s ill-fated 2008 bid for a congressional seat representing the state of Michigan — his platform, as the film shows it, leans heavily on the Ninth Amendment — but his congressional hopes are not the most interesting or thought-provoking part of the film. Almost paradoxically, the most interesting part of this documentary is the fact that Kevorkian does a pretty excellent job of not coming across as particularly sympathetic, something that a viewer might not glean from the film’s trailer.

Here, Kevorkian comes off as one majorly self-aggrandizing guy, and it seems like the director does not have to work very hard to make viewers see that Kevorkian can be difficult to deal with. He often seems so enamored of his own ideas, and his own legacy, that he focuses on these things to the detriment of his friends and allies — and, ultimately, his cause. This becomes most clear in one sequence late in the film, where a longtime supporter of Kevorkian’s publicly disagrees with him at a small town hall-style meeting; Kevorkian responds not by answering the man’s questions regarding the Ninth Amendment, civilly discussing his differences of opinion or why he feels the way that he does, but by yelling at him and then forcefully spitting, “I wish you weren’t here [at this meeting]!” Kevorkian’s behavior during the Thomas Youk case is also ethically questionable, as he videotaped Youk’s death in part with the aim of bringing more publicity and media attention to himself and his cause, even though the videotape would most likely put him (Kevorkian) in prison for murder; as one journalist phrases it, Kevorkian wanted to start a “national debate on [physician-assisted suicide]” by appearing on 60 Minutes with the full tape of Youk’s death. The 60 Minutes footage, both of the Youk tape and Kevorkian’s interview with correspondent Mike Wallace, shown in the film is nothing short of chilling; when Kevorkian intones, “Either they go, or I do,” one may pause to consider that a potential “win” of this particular fight would be built on the bodies of those he has “assisted.”

Unfortunately, no one who opposes Kevorkian’s views on assisted suicide — or his political platform, for that matter (with the exception of the former supporter mentioned above) — gets any screen time whatsoever, and this ends up making the film as a whole seem extremely one-sided. As a viewer, I would have been interested in seeing people who oppose Kevorkian’s method and message, particularly since Kevorkian’s former lawyer simplifies the opposition to him, and physician-assisted suicide in general, by casting any opposition as right-wing religious reactionism versus “enlightenment,” thereby erasing the many disability activists who have criticized Kevorkian and his methods. And while Kevorkian certainly does an admirable job of not coming across as anything other than a guy who overestimates his own importance, or gives any consideration to the reasons why some might oppose his methods or message, the film’s lack of any substantial exploration of opposing view(s) was disappointing.

Despite its flaws, Kevorkian is an interesting, thought-provoking and disturbing documentary. As someone who has complex personal feelings about physician-assisted suicide and its ethics, I am of the opinion that this documentary provides a riveting look at the life of a man whose actions have, for better or worse, managed to galvanize the discussion of physician-assisted suicide, and related issues surrounding medical ethics, the media’s role in medical issues, life, death, and quality of life in the United States.

Commenting Note: This is NOT a thread in which to debate the “rightness” or “wrongness” of physician-assisted suicide in general. Please keep your comments to either the issues discussed here, those brought up by the Kevorkian case/media coverage/related topics, or those illuminated in the film. The entire film is available in 9 parts on YouTube [trigger warning for in-depth discussion of PAS, and accessibility warning for lack of closed-captioning].

So I thought it might be valuable to gather together some ways in which able-bodied people can do something about ableism in the world. Then, next time a person is feeling frustrated about ableism, and is thinking about doing some signal boosting of, say, some crappy thing the writers did on the latest episode of Glee, maybe that individual would have the option of committing to spending the same amount of time doing some more concrete fighting of ableism. Not that I’m critiquing the kind of signal boosting that a lot of us do on the blogosphere! But I’m assuming some people would find utility in hearing about other things they could do that might be useful.

Today I realized something: How my disabilities shape the words I do, and more often don’t, say.

For instance: Whenever anyone uses the word “crippled”, I spot it from a mile away. Context doesn’t matter – it could be in anything – a novel, a newspaper article, a headline. “Recession cripples the American economy”, or “The onslaught cripples the meager defenses” or simply “crippling blow”.

Disability-related PSAs cover a wide range of topics, but generally there are three main categories that the message falls into: how people with disabilities are viewed/treated by society, their value in the job market and society, and what their lives are like. Although these are pretty straightforward messages, there is a great deal of variety in the ways in which these basic messages are presented.

It’s easy to draw comparisons between the Airbender casting and an English actor playing an Irish one, or a Spanish actor playing an Italian actor. But it’s not really the same, and the reason is that Hollywood and media don’t consider whether an actor is Irish or Spanish or English. They think of that actor as “white.” The same is not true of actors who are Asian or Latino, who have to fight over the few roles specifically written for those ethnicities. And a lot of times, even when a role is steeped in Asian culture, even when a role is based on real-life individuals of Asian descent, those roles still go to white actors.

In the two years since I have learned things about my own body. I have learned that once my knees start wobbling, GAME OVER. There is no powering through. There is no mystical internal light of determination that I can draw on – if I keep going my body will fail me. This has been a humiliating lesson to learn. But I can still walk. I can still exercise within limits and these limits expand the more I push them. I have also learned how much privilege I carry. I don’t have chronic insomnia like other members of my family. I’ve never lost a job because of being hospitalized, like my friends with Fibromyalgia. If I’m spending time with someone, and I don’t want to have to go into the whole story I can take an anti-inflammatory and ignore the pain, or blame it on fatigue.

I have a friend who has made comments to me such as ‘You look so thin. Are you sick?’ and ‘You look so thin. Is something wrong?’ I see this person on a regular basis, and my weight has been the same (give or take 10 pounds) for the past 20 years. I find these comments rude and hurtful, so I usually don’t respond and try to change the subject. My husband says that I’m being overly sensitive, but I’d like to put an end to these remarks without being rude or insulting. What do you suggest? Anonymous, Boston

I feel for Anonymous. Comments about weight seem endless sometimes (whether it’s about being ‘too thin’ or ‘too fat’) and people apparently think it’s perfectly acceptable to not just comment on weight, but make a point of harassing people about it. Saying ‘I’m fine’ or changing the subject to make it clear that it’s not an appropriate topic of discussion never seems to penetrate. Likewise with comments about disability. It’s really amazing how you suddenly become public property as soon as anything about your body differs from the socially-dictated norm.

I started reading Miss Conduct’s response, and mostly nodded right along until the point that I’ve bolded for your convenience:

You are being overly sensitive – to your friend’s feelings. Her comments are out of line, and it would be a favor to yourself, her, and the relationship to let her know. She may be one of those lovingly overbearing, chicken-soup-bringing types who clucks over all her wee friends, most of whom may well find it as annoying as you do. Who wants to be told they look sick all the time? Even sick people don’t want that.

You needn’t make a big fuss over the matter with your friend; the less emotional you are, the less the chance her feelings will be hurt. The next time she asks you if you’re well, take a nourishing sip of broth to bolster your courage and say: ‘You know, you’ve made similar comments to me in the past about my weight. I’m actually fine – this is my natural weight and has been for a long time. And I promise you that if I ever am sick and there is something you can do, I will tell you. In the meantime, your questions make me feel awfully self-conscious.’ Your friend may feel awfully self-conscious herself if she realizes that she’s been doing this for years, in which case you can have a good laugh about it. And keep in mind that if this is a habit of hers, based in who-knows-what deep-seated psychological dynamic, she may backslide once or twice, so be patient.

Wait, what?! Miss Conduct, as we know, seems to have a bit of a thing for armchair diagnosis. Which is really a pity, because I think that most of the time she gives very solid advice. She’s the advice columnist I am most likely to agree with, and I think that, like Miss Manners, she’s good about cutting through crap, getting to the heart of the issue, and pointing out that ‘good manners’ doesn’t mean politely tolerating inappropriately personal poking and prodding. But this whole randomly tossing some psychiatrisation into every column thing has really got to stop.

It is, in fact, possible to give sound advice without diagnosing people with things on the basis of a few lines in a letter asking for advice. Anonymous didn’t ask for an armchair diagnosis, but specifically for assistance on dealing with a problem. I don’t see how that comment was relevant, helpful, or appropriate—much like the friend’s concern trolling, actually.

I’d also note that I think Miss Conduct is being too generous in the script for the friend. Anonymous is not required to disclose whether this is ou ‘natural’ weight, nor is ou required to make disclosures about ou medical status and health. Nor does Anonymous need to promise to keep the friend updated on private matters or to provide the person with an opportunity to be a do-gooder in the event that ou gets sick. It’s sufficient to say ‘You know, you’ve made similar comments to me in the past about my weight. They are inappropriate. Please stop.’

Here at FWD/Forward, we read a lot of advice columns, but it’s impossible to catch them all. If you spot something you’d like to see featured in Dear Imprudence, feel free to drop me a tip! meloukhia at disabledfeminists dot com.

I have dealt with disability, in various capacities, for my entire life — this started when I was born three months prematurely and was affected by cerebral palsy (left hemiplegia, if anyone really wants to know) as a result.

I know what you might be thinking: You cannot possibly have CP, Annaham! CP is always severe. It’s always noticeable to people other than the person who has the condition. CP always sticks out, blah blah blah, insert other sundry stereotypes about CP here (because there seem to be a lot of them).

And you’d be partially right, sort of like how my left leg is partially paralyzed. Oh, people notice my limp. Sometimes, they even point it out to me or concernedly ask about it, as if I am too stupid to notice that one of my legs is too short and that my left foot constantly makes a valiant effort to make up that difference:

“Are you okay? You’re limping.”

“You have a limp.”

“What’s wrong with your foot?”

“Why do you have a limp?”

Now, since I have no obligation to a.) respond, b.) educate these potentially well-meaning folks about my condition, or c.) give a shit, I have developed a coping strategy that works best for me, and it is to ignore these people and/or pretend like they might be talking to someone else. Surprisingly, it usually works, particularly when I do not care about seeming rude.

I don’t know what it is about certain bodies and the fact that some people feel entitled to treat said bodies as if they are public property. This body-as-public-property trope is commonly wielded at people with bodies that, through no fault of theirs, don’t fit the expected “norm” and who may be marginalized because of it: women, non-white people, fat people, trans and genderqueer people, people with disabilities, and others. And woe betide you if you fit more than one — or even several — of these non-normative categories, because then people might feel really entitled to comment on your body or its workings (or non-workings), if these things are at all apparent. In my fairly limited experience, it seems as though certain bodies and their parts constitute some sort of threat to an established order (in my case, this would be the abled order in which “normal” legs or feet do not have limps) that needs to be constantly pointed out and then monitored for the person’s “own good,” whether they are fat, disabled, unexpectedly gendered or not-gendered, or otherwise.

It seems vaguely panopticon-ish, and more than a tad creepily paternal: Hey, she has a limp, but she must not know it! We need to tell her for her own good, so that she knows and can maybe work on correcting it. No matter what the person’s intentions are (because these intentions may be sort of twisted “good samaritan” intentions), that’s the subtextual message that I get when somebody decides to inform me about my limp. Regardless of intentions, this sort of monitoring mostly ends up looking creepy and awkward for all involved. Some “good samaritan” may want to focus on my limp and how out-of-place or weird it looks, but just because I am out in public — limp and all — does not make the way that I move around (when I am not in too much pain to move, that is) any random stranger’s business.

Note: This post was written primarily with nondisabled readers in mind.

Cure evangelism is a scourge which seems unlikely to vanish any time soon, so we may as well address it and have a little chat about what it is, why it is problematic, and what you, personally, can do about it. This is not just a problem which affects people with disabilities. Fat folks are often subjected to a form of cure evangelism from people who believe that fat is something which needs to be (and can be) cured, for example, and anyone who has ever experienced temporary disability or illness can probably think of a few examples of cure evangelism which they have experienced.

What is cure evangelism?

Put simply, cure evangelism involves aggressively pushing a medical treatment or approach to a medical condition or disability on someone, without that person’s consent, interest, or desire. It takes a lot of different forms; the pregnant woman who is informed that she must have a natural birth and that if she thinks positive enough, it will happen; the cancer patient who is informed that ‘this great herbal supplement’ worked really well for the evangelist’s friend; the asthma patient controlling asthma with acupuncture who is constantly told to start using inhalers; the person with mental illness who is shamed for not taking medications.

In all of these cases, the cure evangelist identifies that someone has a medical issue, the evangelist has an opinion on how to treat that medical issue, and ou feels entitled to share it. Cure evangelism comes from all kinds of people, including people who have shared that experience and people who have not shared that experience. It all boils down to ‘there’s only one way to handle this situation, and that’s my way.’

Cure evangelism presupposes, of course, that only one treatment for something would be appropriate or necessary. It presupposes that all bodies and issues are identical, which means that experiences can easily be overlaid on each other: ‘if I have asthma, everyone must have asthma like mine.’ At its core, it is about assuming that other people’s bodies belong to us, are subject to our control, and are our business. Indeed, that we have a moral obligation to interfere with what other people do with their bodies. To save them from themselves.

Why is it problematic?

I think that the problematic nature of cure evangelism is multifaceted. There are the issues of bodily autonomy which I covered in the above paragraph, which become especially complicated for women, trans* folks, people of colour, and people with disabilities. Members of all of these groups have historically been treated like property and in some cases are still considered property. And I’m not even talking about the metaphorical sense in this particular case.

When you have been exposed to a culture which regards you as a publicly tradeable commodity, exercising control and autonomy become especially paramount. Being able to make decisions for yourself and your own body without the approval or consent of others is part of taking control of yourself and your identity. Thus, when people in these groups are informed that they must do something, it comes from a very entrenched culture of ownership. The person speaking often has privilege, and is exercising that privilege thoughtlessly. Many people claim to be well meaning, say that they just want people to be informed, but this presupposes that people are not informed on their own and that, moreover, it is only possible to reach one informed choice.

Another facet of cure evangelism is that it is, quite frankly, annoying. People present these things as though they are new and different and no one has ever brought them up before when in fact nothing could be further from the truth. Every single time someone approaches me with a new act of cure evangelism, it’s always to tell me about something which I am already well aware of. In some cases, it might be something I am already doing. Or something which I did which did not work. Or something which I explored but decided was not for me.

When a cure evangelist is cornering me and telling me to do this or that, it puts me in a bad place. Rejection is taken as rude, so I can’t just get out of the conversation. I don’t really feel like discussing my body with other people, let alone how I take care of it, and I’m not really interested in saying ‘yes, I’m actually already doing that’ or discussing any aspect of my treatment plans with someone who is not part of my treatment. It’s a personal matter.

What you, personally, can do about it.

Don’t do it.

It’s that simple. If someone chooses to share the fact that ou is disabled, or sick, or temporarily injured with you, don’t evangelise. Now, if someone explicitly asks you for advice and suggestions, by all means, do so. But don’t do it in a pushy way. Make it clear that these are things you know from your own experience, but that mileage may vary.

When someone chooses to talk to you about ou treatment, listen. Don’t comment. Don’t judge. If that person is doing something which you disagree with, remember that it’s about ou body and ou choices. Imposing your values accomplishes nothing. If someone asks for your opinion, offer it. But, again, don’t be pushy about it. People are engaging in an act of faith and trust when they share that with you; don’t violate that.

If you feel that you have information which is simply critical, instead of volunteering it, say that you have information/advice and it’s available if that person is interested. If that person says no, respect that.

And when people are having conversations in their own community; as for example when people with disabilities are having an open thread about an issue which pertains to them, don’t butt in if you aren’t part of that community. Feel free to watch and take information away, but don’t add your two cents. The people in that conversation don’t want to hear about your relative/friend. They are talking about their experiences.

And, let me tell you, when a friend who shares a disability with me says ‘hey, guess what,’ I listen and pay attention, because it is offered respectfully and with love and from a place of shared experience. And sometimes I say things like ‘hey, I am thinking about changing medications, does anyone have experience with [medication]?’ and people who actually have experience talk to me, and I learn things, and it is good. These situations are not cure evangelism, though. They are about connecting in a place of shared experience and sharing mutually beneficial information.

I read recently in an issue of Family Circle Magazine (DON’T JUDGE ME!) (There was a fried chicken recipe I wanted to try out!) that “Japanese research” (could they be any more vague and list any fewer resources?) indicates that using a Wii Fit burns just as many calories as doing moderate exercise. There was no resource listed, nothing. Just a blurb stating that there was some research going on in Japan telling us that the Wii Fit was good for us. I have read on random gaming and parenting boards that there is hubbub about the Wii Fit that it is exercise vs. still being “just a video game”…

Now, I don’t really care about calories as much (or at all) as I do having access to some kind of exercise or movement that I can do without having to leave my house and trek all the way up to the base, or pay for a pricey gym membership, or exhaust my silverware drawer trying to get there, or trying to get through a class of exercise that is of a safe level for my body. Sometimes I need to move. I’ve found our Wii Fit to be small chunks of movement that I can handle when I am ready for some, and unlike a yoga class, something I can stop quickly when I am out of resources. I could go on…but you get the idea. I still prefer a good swim when I have a good day, but we all know that our bodies do not always give us what we want…

Having a Wii Fit in my house has been something useful for me, and I acknowledge that there is quite a bit of privilege there as well. There are disabilities that don’t make the amount of movement required for the Wii Fit accessible at all. It isn’t affordable for everyone (and we had the console already when the balance board was released, but the board is not required for all the games), and the games aren’t released in all countries. Even on a good day I can not always use the board safely, and sometimes my old issues with eating disorders can’t handle some of the game details that include measuring your weight and abilities to balance…

But the Wii Fit has made exercise, and moderate amounts of movement, available to some people for whom it wouldn’t otherwise have been available and accessible.

What are your thoughts, gentle readers? Have any of you used the Wii Fit and been pleased with it, as I have? What are your major complaints with the idea that it is an accessible form of exercise/movement? Love it? Hate it?

Recently, I was on the commuter train home. I happened to be reading Susan Schweik’s bookUgly Laws: Disability in Public for a research paper. Two middle-aged women sat down opposite me, and one inquired as to what book I was reading.

I am staring up at the sky, and I can see the clouds rolling by. I am going the other way. We are giving a nod to one another as we go our way.

The sounds above me are all muffled, of people going on with their lives. I put them out of my mind. They don’t mind me, and I certainly, at this moment, don’t care about them. The sounds around me are different. They are bubbled and thunderous but deadened. They don’t hurt like the stark sounds of being above.

I glide. Above, I ache, I hurt, I am slow. I can barely move forward. But here, I am a Titan. Gods wish they could move like me. This is where I want to be. My muscles move the way I want them to. They ache and scream with the movement, but there is support under every part of my body holding my limbs as I reach.

I turn face down now, tuck my head, and open my eyes. The world is clear, and the sun beams across the floor in ripples, because it isn’t even as strong as I am here. I expel my lungs as I stretch my legs, moving them like scissors, gently. Every gentle motion has so much power. The movements that bring me glances of pity above make me feel like Poseidon’s child here. I was made to use my body here.

I reach, grab, and pull, gently, and glide again. I turn my head (it doesn’t hurt!) and take in a desperate measure of air greedily. My torso turns as if it can just swivel freely. I look down below me, straightening my spine, and see the blue tiled “T” marking my distance. One. Two. Three, and a tuck, and my legs push me back the other way.

I want to stay here. I want to remain where there is no gravity to pull me against myself and bring the pain back. I dread later. I dread even ten minutes from now, because we all have to pay the piper…

The second lap is slower. I always start off too fast. It is always too long between these trips, or too long between seasons (it is never the same indoors). My body can move, but my lungs burn faster. I have to come up more.

Halfway through I have to stop.

My feet (they are tingling now…again) find the ground and my hands reach for the wall.

No. Please.

I fight on. Because I want to stay here.

Where it doesn’t hurt.

The sun beats down on me.

Reach. Grab. Pull.

And it isn’t just the water I grab for. It is time.

Tuck, push, kick.

Glide.

Under here I am alone with my thoughts, with how good it feels.

But my lungs ache for that air, and my body is tired, and my neck strains now when I turn for that air.

The supposition that one [group] needs the other’s acquiescence in order to exist prevents both from moving together as self-defined persons toward a common goal. This kind of action is a prevalent error among oppressed peoples. It is based upon the false notion that there is only a limited and particular amount of freedom that must be divided up between us, with the largest and juiciest pieces of liberty going as spoils to the victor or the stronger. So instead of joining together to fight for more, we quarrel between ourselves for a larger slice of the one pie.

— “Scratching the Surface: Some Notes on Barriers to Women and Loving” (1978), in Sister Outsider: Essays and Speeches (The Crossing Press, 1984)

Content warning: This post contains discussions about abuse of people with disabilities, including physical assault and the use of restraints.

Last week, a major civil rights lawsuit was settled in Pennsylvania when seven families agreed to accept five million United States Dollars to resolve a case they filed against a teacher and her superiors, arguing that she abused the students in her care and her superiors did not take adequate steps to address it. It is the largest case of its kind in history in Pennsylvania, and one of the largest in US history. The teacher has already served six weeks for reckless endangerment; the question here isn’t whether she abused her students or not, but why the district failed to do anything about it.

These students were in elementary school. They were restrained to chairs using duct tape and bungee cords. The teacher stomped on the insoles of their feet, slapped them, pinched them, and pulled their hair. These nonverbal students apparently weren’t provided with communication tools that they could have used to report to their parents, which meant that the teacher was free to lie about the source of the injuries these children experienced while in her classroom. Horrified aides in the classroom reported it, and the teacher was simply reassigned.

The teacher’s defense was that she didn’t have training or support. This may well have been true. However, if that was the case, she should have recused herself from that classroom. Aides confronted her about her classroom behaviour and she said she ‘didn’t know how to stop.’ I’d say that asking to be taken out of that classroom would have been a pretty fucking good way to stop. If the defense to that is ‘well, it would have ended her teaching career,’ then may I suggest that a person who physically abuses children is not fit to be a teacher? That a person who feels that stomping on the insoles of a child’s feet is an appropriate method of ‘discipline’ is clearly not someone who should be in charge of a classroom?

‘We weren’t sure how a jury would view these facts, especially since children were involved,’ an attorney for the defense said, which is a polite way of saying ‘we are well aware that if this case had gone to trial we probably would have paid more than five million.’ The funds are being put in trust for the children, who, among other things, are in need of therapy.

The restraint of children with disabilities in school is, unfortunately, not at all notable. It’s a widespread and common practice and I see stories about it in the news practically every week. I’m sure a perusal through the recommended reading archives here would turn up several examples. This doesn’t make it any less vile or wildly inappropriate. I am heartened that legislation has been passed to address the issue, but outlawing abuse isn’t enough, and it’s clear that better training, accountability, and transparency are needed. The reports of those aides shouldn’t have been ignored. That district should not have reassigned the teacher to another classroom.

What is remarkable, and important to note, is that it takes a lot of money to take a case like this to court. Which means that settlements of this kind are only really available to families with at least some money. Even with lawyers willing to volunteer time, taking a case through the courts requires time, energy, the ability to pull supporting materials together, and patience. These things are not options for all families. Especially for parents with disabilities, the barriers to getting to court can be an obstacle so significant that even if they want to fight for their children, they might find it impossible to take a case to court.

Access to justice should not be dictated by social status and economic class, but it often is.

We shouldn’t have to pass laws saying it’s not ok to duct tape children to chairs, but we do.